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Shooting Star Chase Children's Hospice

on 23/12/2016

Imagine being told your child due to birthing complications, accidents or illness might not live to adulthood and won’t live the life you’d hoped for. Then add to that feeling the social, practical and financial pressures that come with caring for a poorly child. For thousands of families in Britain this can be pretty overwhelming.

I have to admit of all the forty charities this year, this one was the one I was most unsure about. As someone with no experience of hospices. I couldn’t picture anywhere more depressing but everyone I spoke to beforehand assured me that they are very happy places and that the people who work and volunteer within them are are some of the nicest people you will ever meet. I was intrigued to find out how could somewhere you go to die be happy? And surely the people there can’t all be nice?

So it was with mixed feelings that I walked into children's hospice charity, Shooting Star Chase (SSC) this week. I was given a tour of the charity's Hampton-based, Shooting Star House by Becky Cusens, one of the lead nurses at SSC but in fact we ended up being led around by one of the hospice’s children, Kyffin, just six months into using his tinseltastic walker. You could be forgiven for thinking you were in the North Pole rather than London because the staff and volunteers have gone to town making the hospice as Christmassy as possible! Becky reminded me that actually for children like Kyffin simple things like playing in the snow, baking a pudding or being in a school nativity play present serious complications. SSC work tirelessly to give children and their families these Christmas memories and their motto is to make every moment count. Incidentally you might recognise Kyffin as one of the stars of the X-Factor Christmas single and he has without doubt become my favourite celeb meet of the job so far!

I then had a jamming session with the children and Sarah Hodkinson, lead music therapist and I learnt some basic Makaton, a form of language using signs, symbols and spoken word. Many of the children at the hospice are cognitively impaired and unable to communicate, however the saying goes that when “words fail, music speaks” and during the class it was amazing to see the children rocking to the rhythm and one visually impaired child freestyling on a bell chime with more gusto than Dave Grohl! With my ears ringing (litterally) Sarah told me after the class about her work with both children and their siblings, SSC offer a lot of one to one therapy sessions and it is a chance for children to lose their inhibitions and express their emotions. One fifteen year old child, Matt*, at the hospice has written songs about his condition and even a girl he likes at school. I remember in my skater girl teen days writing an angsty song about a boy at school once and the thought of it ever being published is now mortifying (Derek Davies if you’re reading this, all is forgiven!) but nonetheless it is a normal part of growing up that all should experience.

My next stop was a home visit with Rachel one of the Hospice at Home team. SSC look after over 700 children with life-limiting conditions in London and Surrey and offer short breaks in their hospices, as well as care in a family's home, which is called Hospice at Home. I spent some time with a Hospice at Home nurse and met a little boy of 11 Ted*, Ted has a genetic condition which affects his spine and breathing. Ted has a really lovely family, with two older brothers who clearly think the world of their smiley giggly little brother. We were able to look after Ted for a few hours which is a full time job. Rachel saw that Ted was clean and comfortable and together we read him stories of grumpy goats and Hair McLary for a few hours to give Mum time to do the christmas wrapping she had been unable to get to. There were a few episodes when Ted (who is unable to communicate verbally) appeared to stop breathing and turn a funny colour but Rachel was cool and calm, sat him upright to allow him to clear himself. For me, it was quite frightening to watch but for Rachel and Ted’s family this is just part and parcel of day to day life.

As the hospice is based in south west London I was able to pop in to visit my English grandparents and avid RNLI volunteers, John and Jill Goddard, for an epic home cooked roast and catch up one evening. They asked me what the staff and volunteers were like at SSC. I can hand on heart say that every person I met at the charity from the singing cleaning staff at the charity's Guildford-based hospice, Christopher's, to the cheerful cooks, to facilities manager (and would-be comedian) John, to nurse manager Paula Manders, to the marketing and comms team, to the lovely Katy in Challenge Events, Melanie Hill in volunteering and to Karen in the charity shop was bright and friendly. No-one more so than Maggie Rowell, a volunteer at Christopher’s.

Maggie is a retired textiles entrepreneur and volunteers in the hospice every Wednesday on the early shift. Maggie embodies the spirit of the hospice movement, and indeed volunteering, heart and soul. After starting life volunteering for SSC in 2008 as a volunteer fundraiser in the community, Maggie asked to move in the hospice itself 3 years ago where she has trained and learnt from nursing staff there. My day with Maggie saw us assisting care staff to dress and wash the children in the morning, helping in the laundry room, playing musical instruments, singing along to the Royal Philharmonic Orchestra, mopping spillages, making brews, changing sheets, sorting christmas presents and sitting dry-side to support a child and family in the swimming pool! The hospice could not function without volunteers like Maggie giving up their time unpaid, although she would not accept such praise - for her she simply adores the children at the hospice, she knows their birthdays, their favourite films and she loves working there. The Christmas cards she receives from many families who have long since stopped using the service is a testament to the impact Maggie and indeed the hospice has on the people it helps.

Newest Member of Royal Philharmonic Orchestra

It is important to correct a misconception that children’s hospices are just about end of life care, SSC offers services including short breaks at the hospices, Hospice at Home, day care, symptom management, bereavement care and a range of therapies and support for the whole family, not just the child with a life-limiting condition. Barbie and the care team at SSC told me how empty it can feel for a family after a loss, for some families they may have been used to 200 odd visits a year from different professionals and constant phone calls. When their child dies, all that stops and suddenly no-one is talking to them. Already over-stretched NHS staff must move onto supporting the next family. SSC recognise this is an extremely vulnerable time for families and they offer support for families post-bereavement for as long as they need with therapy, memory days and support. For some they might not need the support, for others it will be vital and others might be fine at first but a year later reality can often hit. I spoke to a parent at the hospice who described the staff and volunteers as an extended family, sometimes parents feel uneasy talking to friends and family about their child’s illness for fear of making others feel awkward of for bringing the mood down. The hospice is a place where people come from all walks of life united by their inevitable loss which could be years or days away and the staff and volunteers are an essential part of making that journey easier for them. Many parents report that in the first few days of bereavement they can remember very little about what happened and it might be one comment from a hospice nurse that sticks with them at that incredibly vulnerable time.

You may have noticed you have come to the end of a blog about a hospice and I haven’t yet talked about end of life itself. During my week at SSC two children passed away, one at each hospice and so I asked Paula Manders, head of the nursing team at the charity, how she felt about her first end of life experience. Paula described feeling “saddened but privileged to share such an intimate moment in a family’s life”. I have talked about my own perception that the job is gloomy but the nurses I spoke to at SSC describe end of life as a deeply profound experience. The love that pours out of people in such moments reminds us quite why we are alive, what it is to be human and what we can give to one another in our time on earth. It was during that conversation that I realised hospices are not about dying, they are about living.

Best wishes

Alice x

* children’s names have been changed

A final word about funding politics for those interested in learning more:

Shooting Star Chase helps around 700 families and it costs £10 million a year to maintain their current level of care. Of the £10 million just 10% is government funded, which is the average contribution level for a children’s charity, as compared to an average of 30%** in adult hospices. Let us ignore the politics of this disparity for a moment because there can be no doubt that hospices, whether for adults or children, do vital work making palliative care more navigable, taking the pressure off the NHS by reducing the number of people who are in hospital beds at the end of life and giving people a choice. Almost three quarters of hospices expect their funding to be cut again** which would render them unsustainable at their current levels without further public support and a more supportive, collegiate relationship with clinical care commissions and local authorities.

So if you are thinking of making a donation or volunteering in a charity this Christmas or in the New Year, please do think of your local hospice. If you'd like to support Shooting Star Chase with the work they do making special memories for children with life-limiting conditions and their families, you can text SSCH25 £5 to 70070.

** Source: http://www.togetherforshortlives.org.uk/news/8182_fragile_outlook_on_statutory_funding_for_hospices_in_england

P.S. The children's nativity video is live and well worth a watch!

P.P.S. Nick Evans and Cam Holenstein of Harlequins rugby club joined us for the Christmas party and were great sports, getting stuck into all the games. I was able to grab a quick sportsmen sandwich photo by the tree!

Alice Biggar

Author: Alice Biggar

Alice is our National Philanthropy Manager & current holder of The Nicest Job in Britain.